We left Braden...

Well, God must have thought that Brad and I needed some fun time away from the baby, because last week an opportunity was dropped in Brad's lap to go to the Disney Institute Keys to Success Leadership Seminar at no cost, and I was invited to join him. In a matter of mere hours we had complimentary hotel rooms, flights, and someone we trust to keep Braden.

His daytime caregiver, LaTacia graciously agreed to watch over our little guy for 3 nights. We told her daughter JazMyn that Braden would be moving in for a few days. She replied, "Braden and I are getting an apartment?". Hilarious. For a week until we left she kept referring to her bedroom as "the apartment". I asked Jaz to take special care of Braden while his mommy and daddy were gone, and let me tell you that kid really took that to heart.

She was Braden's little care-giver, and was telling her mom and grandmother how to and not to do things with Braden. LaTacia's mom takes special care of Braden too... and JazMyn saw her grandmother suctioning Braden, and told her, "Don't suction him like that!" Can you believe it?? What a scream she is... she doesn't like to be suctioned down her nose, so she was protecting Braden telling grandma not to suction him like that. I was laughing so hard hearing the story from LaTacia. Braden did just fine while mommy and daddy took a work trip to Florida, and they even got to play a little bit too.

I have attached some pictures of mommy and daddy being little kids at Disney World. (Please note how much we got "into" the ride... our faces are priceless). They are already talking about when to go back and take the whole family... it truly was a "magical" experience.

Hugs to all,
The Wilsons

We are better and celebrating Mardi Gras

We have gotten over our pneumonia and we are very happy with Braden's progress. This is our first pneumonia that hasn't been near-fatal nor required extreme urgent care in the intensive care unit. PROGRESS!! Braden is getting stronger to handle infections better, and we are convince our vest therapy is helping his pulmonary health.

Last year, some of you may remember we were in the hospital this time last year. We got to take Braden to his first Mardi Gras parade over the river with our friends the Heckert's. You can see, the mommies have like taste when it comes to dressing the boys, and no, it was not planned:-) We bundled up to watch this family-friendly parade and later joined Jackson in his new therapy room to play with Braden.

Mommy & Daddy got to take a last-minute work trip to Florida this past week, so we will soon post pictures from our adventures...

Happy Mardi Gras!
The Wilson's

Revenge of the Pnuemonia

Well today became our third episode to battle pnuemonia. (Star Wars references for you enthusiasts out there). But there are many positives this time around. We convinced our medical team to send us home to recover instead of admit us to the hospital, and risk exposure to other infections we could pick up there to further complicate our scenario. So the good news is that we are home for now.

The early morning hours were of more concern, as Braden had labored breathing, escalated heart rate, 100 degree temp, was throwing crying fits, was not responding to higher oxygen levels, etc. By the time we had our chest x-rays done and bloodwork taken at the doctor's office, his temperature had subsided, he was no longer needing oxygen assistance, and his heart rate was only slightly elevated. So we got the nurses to access his mediport (you know this is always a "fun" adventure and today was no different), so he could get antibiotics through IV instead of injection (the body responds better and faster to the IV drugs vs. intramuscular injections).

So home health will come give us our IV infusions over the next few days here at the house, and Tuesday mid-day we will go back to the Dr to re-evaluate our situation, provided we don't need to go to the hospital before then. Let's pray Braden will be the little fighter we know he can be, enough to keep us out. His white count was a little elevated at 14.9, so cause for concern, but not enough to be scary. The x-rays showed a slight pneumonia in the right lung, which is a new thing for it to show on the films so early on. The doc thinks we caught it on the early side this time since his white count is not severely escalated, and that we are doing a great job paying attention to his needs and recognizing when something just isn't right.

Send us some extra prayers for our little fighting angel, we appreciate your thoughts.

Mommy Kodi

The end of Xmas in Kansas

Well, after the blizzard conditions in Kansas City, we had relatively nice trip from St. Joseph, MO to Wichita, where we spent Christmas Eve and Christmas morning with Brad's clan. We got the great news that aunt Jenny & uncle Brian are expecting a baby this July, and we are so excited to have a cousin for Braden!

We made our way out to Western KS (Ashland) to see Kodi's clan. Some of Kodi's step-siblings had to leave to get back to their respective homes in other states to work the next day. The good news, is that Aunt Jodie got engaged to Brad, and they are planning a summer wedding in Omaha, NE. The unfortunate weather conditions lead to Aunt Regina rolling over and totaling Aunt Shauna's SUV. Luckily, she was OK and suffered minor injuries and was able to be released from the hospital that evening. Uncle Cody (Yes, Kodi has a step-bother named "Cody") and Cousin Lance were able to leave with Shauna that night to get to Regina, which I am sure was such a relief on her nerves. We are so very grateful she was OK.

We did get to spend time with Aunt Shala, Cousin Paxton, Uncle Shane, Aunt Jenny and Cousin Peyton at Gram & Papa Tom's. The rest of our stay in western KS was misty, icy, and snowy, so we didn't venture out much, other than to get grandma's minivan ("Braden's Personal Chariot") into the shop to get it road-ready for the trip back to Wichita and then on home to LA.

We made a pit stop in Pratt, KS on the way back to Wichita, where the minivan decided it wanted to stay for a few days. Luckily, it broke down directly across the street from a dealer who was able to fix it New Year's eve. We made our way back home to LA relatively uneventful (Thank you, Lord!). We got home in time to prepare for our LSU Tigers to take on the Ohio Buckeyes for the national championship football game, and as you know, our beloved Tigers WON!!

I will post some snowy/icy photos from KS later this week. Thanks for stopping by, be sure to leave a note for Braden if you get a chance. (Mommy will be scrapbooking the blog for him).

Love from the Bayou,
The Wilson clan

More Holiday Adventures

Well we eventually made it into Kansas amidst the blizzard white out that gave our pilots less than 1/4 mile visibility. We were one of the last flights in on Saturday, and Brad's grandparents from St. Joseph, MO came to pick us up from the airport. They were able to come get us, but the dangerous conditions and multiple pile ups on the highways forced our way home not too feasible as visibility neared zero in the white out. We went a little south and pulled off to a shopping center to warm up at the bookstore and grab dinner to hopefully let the weather clear up, which didn't happen. Luckily Brad's aunt & uncle who live in North Kansas City who graciously agreed to take us all in for the night.

The next day we finally headed to St. Joseph, MO to G&G Wilson's and that night had dinner with both sets of grandparents and some extended family. Some of the pictures here are Brad's cousin Lori's children - Emily (4), Nicholas (16 mos). They were so sweet to him!

This morning we headed south to Wichita, KS and saw all the snow the storm left behind as it started melting off. We wanted to introduce Braden to the snow, so we took him out to make a Braden Snow angel. We wish you all a very Merry Christmas, and hope to have postings later this holiday as we head on to see more family and celebrate the New Year. Thanks for keeping up with us, we wish you all a prosperous and fulfilling New Year!! God Bless!

The Wilson's

Holiday Adventures

We have been enjoying the holiday season... we went to a christmas celebration on campus where Braden took his first ever photo with Santa... of course, Braden was sleeping at the time, but Santa didn't seem to mind:-)

Daddy got his picture with Braden in front of the LSU fire truck - the reflectors came out neat in the photo.

Last weekend was an area Christmas parade - a neighborhood parade only a mile from our street - so we met up with Jackson's family to enjoy the parade, have dinner together, and exchange gifts. The boys really enjoyed their new toys that made sound... Jackson played with his piano alligator long after they left our house, and Braden enjoyed the lights and sounds of his new toys a lot.

I took some pictures of the boys laying together... Jackson wanted to be right up next to Braden to see his face, and even managed to lift his little arm to put in on Braden's (BIG progress for Jackson!!)... and he kept rolling over to see Braden closer... it was just adorable:-)

The other pictures below are of Braden after Daddy put him down for a nap to bear weight on his knees, and it was too cute not to capture - the funniest part was when he later rolled over in his sleep into the second pose you see. It cracks me up how he sleeps sometimes, but I guess most kids have their own quirks like that too.

We have finally started speech (oral motor) therapy - and we are so very excited!! Braden was OK with most everything we worked on, like the massaging, but he definitely showed a non-preference by shaking his head back and forth to a few of the exercises.

He continues to enjoy bearing weight, especially leaning on the exercise ball. He recently has learned to cry for sympathy, and it's so sad and pathetic it is humorous... I love to see his personality grow.

We hope to make another post before heading off to see our families in Kansas... wish us safe travel up North, and keep posted for more pictures!

Merry Christmas and Happy Holidays, we look forward to a fantastic new year!!

The Wilson's

Christmas Pics

A growing boy....

At 18 months, Braden weighed in at 24 lbs and 28 1/2 inches tall. At 19 months, he is now 24 lbs 6 oz and 30 inches tall!! The doc measured him at a mere 29 1/8", but he was not relaxed like he was when mommy & daddy decided to measure him the other day. His therapists kept commenting they thought he was getting bigger, and we agreed, so we decided to measure ourselves, and imagine our surprise when a month later he had grown so much!!

People often comment on what a "big baby" he is... but if he developed like other children he would be moving about and you could see how short he is in stature compared to his peers... he is not even on the curve for children his age. However, for his weight he is just below the 50% mark.

We still don't have results to share from his MRI yet, but hope to next week. Please pray for our doctors to revisit all his medications with the new information so hopefully we can still postpone the keto diet and try some new meds.

We didn't take too many Thanksgiving pics - too busy frying 3 turkeys and enjoying time with friends... so I am sharing pictures from earlier this month when Jackson's mommy & grandma went with Braden and I to "Mistletoe Market". Again Jackson just loves playing with Braden's hair, and his grandma got such a kick out of how much joy Jackson expressed through his laughter and squeals of delight as he played with Braden.

We will post some photos from Braden's christmas session next week, so stay tuned!!
The Wilson's

MRI This morning

We have been trying since JUNE to schedule Braden an MRI. Sounds simple, right? If you have read any of this blog before, you know just how far from the truth SIMPLE can be:-)

What is complex about Braden's case... is three main things. 1. The neuro wanted a special kind of MRI done (spectrometry?) done... it's like a more in-depth look at damaged areas, I think. 2. Due to Braden's respiratory condition, the hospital (and only place in town who does this special kind of MRI) did not want to do an MRI on Braden unless he was on a ventilator. 3. Sedation was not an issue because of his floppy airway concerns. SSSSSOOOOOOOOOOO... we finally got the neuro on our side about NOT wanting to put Braden under anesthesia, as he has a very difficult time coming off anesthesia, and an even more difficult time coming off a ventilator, and we felt it wasn't a pressing enough of an issue or necessary in order to validate going through all of that and the risks associated with those procedures. So we FINALLY got the hospital to agree to do it without sedation and without anesthesia, and if it didn't work, then we would just try to do it at another time when he was already under those conditions of a vent for surgery, etc.

They needed to do a 2-part MRI... a non-contrast and a contrast MRI. The first they do without anything... the second they add a contrast dye to the blood stream to the brain to get a clearer picture. Braden slept soundly through the first two parts of the MRI, and did just fantastic - NO SEDATION, NO ANESTHESIA... so it was worth the struggle and the fight against the "doctor's/MRI team" judgement to have it done the "mommy and daddy" way. He did just fantastic, and they did not need to do the 'spectrometry' part of the MRI. We are so proud of him, and knew that he could prove the MRI team wrong about his ability to be still and quiet without sedation or being put under. Of course his nurses were doting all over him:-)

We started doing our VEST therapy a few weeks ago, and I have included pictures. It looks a lot like a water safety lifevest, it inflates with air, and then pumps air into the vest and it is like us patting him all over to break secretions in the lower lungs up to work them up into the upper airway for coughing out or suctioning. Our little daycare friend Jazmyn calls her VEST machine her "washing machine", because she says it shakes her up like sitting on the washing machine:-) Mommy catches people a little off guard, when she says "I have to go shake Braden" (meaning hook him up to his machine that more or less shakes him):-) Braden, funny as he can be - usually sleeps through both treatments!! We think this machine will continue to help Braden grow stronger, by helping us avoid additional pneumonias he may be susceptible to. As you can see, he gets his breathing treatments at the same time, it helps break stuff up in the lungs even more so, for better pulminary health!

I have also attached a picture of Braden's picture up on the wall at Sears... he is up there with some professional models!! :-) We had his Christmas pictures taken and will share next week.

Thanks for checking in on us - check back soon for Thanksgiving photos and his christmas photo session at Sears! Love to all,
The Wilsons